When I was about ten years old, Mom kept going to this medical centre that wasn’t a hospital, but an office in some suburban office park. My brain couldn’t wrap itself around the idea that medical care could even be done in a place that wasn’t a hospital or a doctor’s office like the one I went to when I was sick.
After going there a couple of times, my parents told me what was going on: Mom had a tumour near her pituitary gland. It wasn’t cancerous, but if they didn’t operate on it then she was going to go completely blind within ten years. (She was born blind in her left eye.) They could try to operate to remove the tumour, but the operation had a 50% mortality rate. It seemed like operating wasn’t even a possibility for Mom if there was that much of a risk of her dying; she wanted to hang on for as long as possible, even if she had to spend the rest of her life unable to see. (She went to Joe Bassett, the owner of Toledo’s biggest health food store, and the supplements that he put her on let her keep some of her eyesight for the rest of her life. I am in his debt for that.)
Mom didn’t have any other serious medical problems until 2009, about a year and a half after Dad died. She’d always had some intestinal trouble, including frequent kidney stones, but she went to the hospital twice that autumn due to attacks of diverticulitis. She managed her diverticulitis well, even if she could no longer have the raspberries that she loved so much, but age (and a five-decade long smoking habit) were quickly creeping up on her.
This past April she began having more intestinal troubles that she ascribed at first to her diverticulitis, and she tried to ride those out. Eventually, though, the pain got so severe that she was rushed to the ER, where doctors soon discovered that her large intestine had ruptured. She was in severe septic shock, and the doctors told us that she only had a 50% chance of surviving another 48 hours. She got past those first scary days, but from that point on it was hard not to be conscious of the fact that Mom was on borrowed time, especially when it took her over a week to regain consciousness from her surgeries.
Mom finally woke up, though, and slowly got her energy back. She was bedridden for over a month, though, and they’d had to give her a colostomy bag after her surgeries, so she had to undergo a lot of physical therapy to start walking again, therapy that was very tiring and tedious for her. It didn’t help that she fell and hit her head several times while trying to walk to the bathroom and back, and she got more and more withdrawn after each fall.
Eventually, after her final fall, one of the nurses at the hospital she was at had her taken to a brain specialist. As she feared, Mom had suffered a stroke at some point, and her MRI revealed an edema around the tumour by her pituitary gland. Mom never did walk again after that, and after further treatment — her brain was completely inoperable by that point, so they put her on a course of steroids to try to reduce the edema — it was a struggle for her just to answer questions in more than one word, or move her arms accurately enough to rub her face or scratch any itches she got.
They took her off the steroids after about four weeks, and then three days later she was diagnosed with both pneumonia and a high-level staph infection. (This happened the Sunday before I started teaching fall semester courses, and I’d be lying if I said that Mom’s medical problems haven’t completely messed up my teaching this year.) They drained her lungs and got the staph infection under control, but she wouldn’t regain consciousness. After a couple of weeks she was in need of a tracheotomy (since the breathing tube they’d put in her would eventually wear through the skin around it), but the doctor who was responsible for performing tracheotomies told us, in no uncertain terms, that he thought the procedure was pointless because Mom would likely die within a matter of days (maybe hours), and the tracheotomy would only prolong her pain.
At that point my family agreed to terminate life support, but only after getting hold of relatives in Michigan and letting them schedule one last visit to see Mom. I still remember going into her room at the ICU and just telling her everything that had happened, in case the damage to her brain had ruined her memory. I hadn’t really cried that much for the previous four months, but I cried over her a lot that afternoon as I said what I thought would be my last to her living body. As I was pulling my gown and gloves off, I looked back at her and said, “I love you, Mom. Thank you for everything. I will see you again soon.”
The next twenty-four hours were pure hell for me, as I struggled to get on with the most basic of tasks, knowing that at some point we would tell the doctors to begin “the protocol” that would lead to Mom’s death. Despite my personal beliefs about life, and that every instinct in me was saying that Mom wouldn’t want us to keep prolonging her life, I wasn’t ready to let her go. I knew that I’d never be ready to let her go, but at that moment I just couldn’t fathom the thought of Mom dying, even though we were already on over four months of borrowed time after her initial hospitalization.
The next evening, though, I got a frenzied phone call from my sister. She’d just gone to see Mom in the ICU, and Mom was awake. She couldn’t talk, but her eyes were open and she was able to communicate through hand-squeezes, and the biggest hand squeeze she gave was when my sister asked her if I should come over. I rushed to the hospital, and Mom was still awake. I pretty much told her everything I’d told her the day before, just in case she hadn’t heard it, and I told her that I really didn’t know how things were going to go from there because she’d defied all medical expectations. I said the same phrase to her that I’d said before I left her the day before, and I also sang “We’ll Meet Again” to her, just to remind her that no matter what happened from that point forward, we would meet again some sunny day.
Of course, the entire family immediately reversed course on ending Mom’s life support and giving her a tracheotomy to help her keep breathing; the operation was very risky, just because Mom was in such a fragile state that any operation was high-risk, but she got through it okay. I kept going to see her, even though there were many days when she was so tired that she couldn’t even acknowledge my presence. I told her what I was up to, and as much as I could tell her about what was going on in the outside world without depressing her too much. (We’d talked about the Cubs’ amazing run that season, and how the last time the Cubs had made the World Series was the year she’d been born. She was a Yankees fan, but like me, she can appreciate a good story.) I was especially grateful that she’d lived to see me publish my first book, even if it was a self-published ebook, and that I’d dedicated it to her. I kept telling her about how I was trying to do my best to help other people, through my teaching and my political blogging and my life in general, and I hoped that it helped her to feel that she’d done some real good in this world.
A couple of weeks after the tracheotomy, though, she had an aortic embolism, which caused another scare. She was rushed to the ER on the day when I taught my first class in Michigan in over five years, and I only heard that she’d gotten out of surgery successfully just fifteen minutes before my class started. (I could tell that I was distracted as I taught that first class, and I don’t think my students have felt comfortable with me since then.) As with her previous medical problems, she was moved to a rehabilitation hospital to try to get her ready for eventually coming back home. Throughout all her ordeals, the one thing that was most clear was that she wanted to come home, even if only for a few hours, to pet her cat and watch the squirrels race across our porch.
I went to see her yesterday, and she was alert, but she was also clearly in some kind of pain. I made sure to let the nurses on duty know, and they said that they’d look into it. My sister texted me later that day to let me know that they’d scheduled a chest x-ray for Mom, and then this morning, shortly after I woke up, I got another text saying that Mom had been diagnosed with pneumonia again, and was going to be moved to another hospital shortly in order to treat her.
Mom’s heart stopped on the way there, and they couldn’t get it to start again.
Even though we’d been on borrowed time for over six months there, the reality of Mom’s death has still hit me harder than I thought possible. When Dad died over eight years ago, I had Mom to help me through the mix of emotions I felt back then. Now I’m sitting up in my room by myself, and even though I can feel my parents here with me, and I can recall all the lessons they taught me, I’ve never felt so alone in all my life.
I’m not sure how things will go from here. As I was writing this blog I was informed that Mom named me as the executor of her will, and the fact that I still haven’t been able to find a full-time teaching job after all these years means that I’ve probably got a lot of sacrifices to make in the days and weeks ahead, but none as big as what happened earlier today.
I’ll probably write a lot about Mom in the coming weeks — if nothing else, it gives me a good excuse to ignore politics for a while — but before I end this entry I’d like to share with you all a message I sent to my friends on Facebook several weeks ago, shortly after we’d made the decision to eventually terminate Mom’s life support. I’d been posting friendly-only entries updating everyone on Mom’s condition, and at that point it felt like asking for everyone’s thoughts and prayers was no longer necessary. As I sat there by myself in the ICU waiting room, Facebook on my phone, I tried to reach for some kind of profundity about Mom and her life. Normally I don’t do a good job of coming up with that sort of thing off the top of my head, but that afternoon I think I managed to succeed:
I deeply thank all of you who have sent your thoughts and prayers these past four months. Even if you never met Mom, if I have done any good for you in your life then she deserves all the credit. I am just the instrument of her love, and I ask all of you to please spread your love to everyone you meet, because that’s what Mom would have asked you to do. Thank you.
I don’t know what’s going to happen in the coming days, or even hours, but I’m going to try to keep living by Mom’s example. That feels like it’s going to be harder than anything I’ve ever done before in my life, but Mom would want me to try my best, and so that’s what I’m going to do.
Everyone take care and be well. I will write to you again soon. – Sean